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Wildly wondering about life

A different October

I am still in disbelief but I am ready to go ahead and put it out there, deep breath, here goes. I like October, I might even be loving it. I used to crave October, back when I lived in a land without seasons I eagerly anticipated the change in the menu and relief from the heat. Then it was Claire’s birthday and that was even better until that whole Rett Syndrome diagnosis came and wrecked it all. It turned October a month of grief, of IEP’s and worst of all fundraising and awareness. There was no footage of a cute little girl walking up to the pumpkin she liked. Birthday celebrations were depressing as we never knew what gifts to get her and what we could do to celebrate her. Honestly, I don’t even remember what we did for Claire’s birthday last year. I know that two years ago we had a bowling birthday party and we had her behaviorist there on hand to help her when she did the screaming, not breathing , ruin the party thing. It’s obvious why I stopped loving October.

Change has been in the air this year. October is no longer something that I am enduring. Instead of beating the drum of “really, please give me your money, this sucks” there has been discussion of the trials that are happening now. I have been talking to the people in Boston about the timing for Claire to participate in this exciting research. I have been watching the updates of the exciting things the girls in the trial have been able to do with their bodies. This year, Rett Syndrome is a much less depressing thing to have, not just because I have been in therapy but because doctors are closer to helping unlock the girls.

As exciting as that is, there is something even more exciting here in Rettland. We’ve been out exploring and as it turns out, Rettland actually borders on the land of the nuero-typicals. This weekend we celebrated Claire’s 8th birthday at the mall with her two best friends. For 5 hours the girls pushed her around, helped her find clothes that she liked, settle on matching BFF necklaces and play around like girls do. Claire laughed and was silly like the little girl that she is while she played with her friends and in those moments, Rett Syndrome completely faded out of the picture, they were just three friends having a great time. The next day was the fall festival at Claire’s school and for some strange reason Jared and I weren’t afraid of the potentially devastating social situation so we went. It was awesome. Jared stood around and chatted with parents while I watched Claire and her friends mill around. The principal took a picture of the trio, gave me a big hug and told me how happy she was to have us as a part of the school. I saw all sorts of kids and didn’t have a single pang of grief or thoughts of what Claire was kept from doing on her wheels. As we drove away Claire was so peaceful, her hands quiet, her eyes able to focus on the trees as we drove and a gentle smile on her face, just like her sister in the other seat. To say it was a wonderful weekend would be an understatement. The closest I can come up with is life altering in a change the way you dream sort of a way.

As fabulous as October has been I am finding that I am still exhausted. I won’t be blogging again until November. I think we’ve all become more aware over the last few weeks. To everyone who has commented, shared and encouraged me along this crazy last few weeks thank you so much for all the love, really, it means so much. I’m going to take a little more time to just be in Rettland, maybe with one foot over in the land of the nuero-typicals. This is what the view looks like from there, it’s pretty great.